too many choices...
Saw my rheumy today. I was telling her about my extreme hair loss since starting the Methotrexate. She said that since my CK numbers have been consistently normal for the past 3 months and I am feeling better, she is ok with me stopping the MTX. She said (for the rash) she would start me on Plaquenil if I wanted too. She said the Plaquenil does not help the muscles but does help the rash. I told her I was very nervous about stopping the MTX since I have been feeling pretty good. At the same time, I would prefer not to go bald. She said we will monitor my CK's and if I feel like I am starting to slip, we can always go back on MTX or try Imuran. She told me I didnt have to decide today. That I could think about my options and let her know what I want to do.
I dont know WHAT to do. There is a huge part of me that would love to stop the MTX and be able to wear my hair down again. And not worry about what it may be doing to my liver. There is also a huge part of me that thinks the MTX is what has made me virtually pain free again and am scared to death of returning to that way again. I know I can always go back on the med if that happens but I'm just nervous.
So, I guess I have some decisions to make. Stay on MTX and continue losing my hair. Stop the MTX and go on nothing for now. Stop the MTX and start Plaquenil.
We are also still trying to get me off the Prednisone. I started 2.5 mg this week. Going to do that for 2 weeks then 2.5 every other day for 2 weeks. We tried this about 2 months ago and I didnt do well but it seems to be going better this time.
Any advice???
I dont know WHAT to do. There is a huge part of me that would love to stop the MTX and be able to wear my hair down again. And not worry about what it may be doing to my liver. There is also a huge part of me that thinks the MTX is what has made me virtually pain free again and am scared to death of returning to that way again. I know I can always go back on the med if that happens but I'm just nervous.
So, I guess I have some decisions to make. Stay on MTX and continue losing my hair. Stop the MTX and go on nothing for now. Stop the MTX and start Plaquenil.
We are also still trying to get me off the Prednisone. I started 2.5 mg this week. Going to do that for 2 weeks then 2.5 every other day for 2 weeks. We tried this about 2 months ago and I didnt do well but it seems to be going better this time.
Any advice???
Replies
I am so glad you are feeling better. I would weigh my options as well and see what others think. When I went to John Hopkins she wanted me to stay on cellcept a year after I was feeling better. I guess it\'s the risk/benefit question. I would get my bloodwork monthly and check liver enzymes.
I have had more pain with the tapering of pred but it\'s probably due to my steroid myopathy as I\'ve been on it 18 mos. I try to rest on those days I feel worse.
Hope that helps
Love hugs and prayers -:)
Hi Angie, you and I are almost on the same medicines and my hair was falling out a lot too, but lately it seems to have slowed down and I am still on mtx 25mg, 3 mg of pred and plaquenil 400 mg and folic acid and calcium and D and a multivitamin. I know you could get back on the mtx if you feel sicker again but personally I wouldn\'t try that, it takes too long to start working again. I hate taking it and I hate the shot, but I think it helped a great deal with my strength returning and I cannot live like I was. So, that is just my opinion. I know you are just gathering information right now, it\'s hard to make these big decisions isn\'t it? The answer will come to you and you can always change thing up again if you need to.
Big Hug
Maruska